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Relief, guilt, and fear

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Prostate Cancer
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Posted 5/21/2014 8:58 AM (GMT -5)
The relief part. 3 years and 2 months from completing SRT and my PSA <0.05.
The guilt part. I am always a little hesitant in posting my stats because I know some others are doing worse than I am. Everyone here is very supportive, but still, I feel like maybe I shouldn’t post unless I have a problem, which brings me to:
The fear part. Waiting for the results of the test is always nerve wracking, but this time, it just felt a lot worse. Again, I shouldn’t complain, as others have it harder than I do, but I think I could have a heart attack while waiting for the results, and I get my results inside 24 hours. I know Compiler asked this before, but how does everyone cope while waiting?
Posted 5/21/2014 2:02 PM (GMT 0)
Do Not feel guilty about being alive... You've been through a lot and have the right to celebrate. And then there's the part where some are starting down the road you've already traveled and you give them hope.

There have been tons of posts about the waiting part. Not much you can do there except do drugs or stay drunk until the results come back... (just kidding about some of that)
Posted 5/21/2014 9:02 AM (GMT -5)
Relief, Guilt and Fear. Sounds liek a Sergio Leone movie.

You should not feel bad about doing well. That's the kind of news that gives people who visit this site hope and everyone is constantly rooting for other folks here.

Anxiety has kind of vanished for me, given I'm not due for another 6 months. But I suspect it might come back. I do know that 3+ years out I am far better prepared for bad news than I was when i was first told. At least I feel like I am should that bad news come with the next test.
Posted 5/21/2014 9:06 AM (GMT -5)
Thanks for the responses. You guys are great!
Posted 5/21/2014 9:19 AM (GMT -5)
Except while on Lupron, my PSA just goes up. Something like a rocket. PSA got to 7, did a 6-month Lupron, down to "undetectable". Went off Lupron, and it rumbled around a bit, then the last two tests, lift off!

12/13 0.7
03/14 1.3
05/14 3.1

Based on this, I will be back on Lupron in June.

But I could tell it was coming back, as the bone pain is getting worse fast (4 vertebrae, 5 ribs involved).

I have no PSA anxiety - I know it is going up.

And no fear about posting good news. It helps the new guys understand that we are a fairly unique group of people who have more issues than the average guy. If there were no good stories, this would be a very dark and scary place.
Posted 5/21/2014 9:47 AM (GMT -5)
I'd like to echo DavidG's observation about giving other guys hope. We have a lot of guys who had surgery and are watching their PSA creep up. (You probably remember that part.) It really helps them to hear from guys who had SRT and are doing well. One of the problems with this site is that we are astatistically heavy in high-risk disease and treatment failures here. You provide a refreshing balance.

We have had discussions about how long it takes for PSA anxiety to go away after one is finally cured. I don't think we ever really decided the question but, as I recall, the answers did tend to cluster around six years and never.
Posted 5/21/2014 10:43 AM (GMT -5)
Northfoot,

Just chiming in as another who has zero PSA - now 4 years after SRT.

No need for guilt, though I still worry some at each PSA test, knowing that I'm doing way better than the average guy with my stats, based on the nomograms. But then my wife worries more than enough for both of us.

Jim
Posted 5/21/2014 11:05 AM (GMT -5)
Northfoot,

There is nothing to feel guilty about and your success are to be celebrated regardless of our own successes or failures. Each one of us has a unique condition and some are doing fabulously and some not so much. What we can be is an inspiration to each other to keep moving forward, sharing our experiences and offering support where needed. I am happy that you have good results and wish the same for everyone here. None of us ever thought we would be here, but here we are. I am glad I found this group and as I go through my journey, I will share my experiences, successes and failures. I hope others do the same.

*************************************

DX 10/04/2013, Age 54, PSA 187.5
07/11/2013 psa 3.31
3/10/2010 psa 1.87
1/24/2006 psa .87
Biopsy 10/28/2013 4 cores positive gs 9 (4+5)
Bone Scan 12/09/2013 2 hot spots in spine
Hormone Therapy started 12/17/2013 22mg lupron, 50 mg Casodex
Bone biopsy 01/09/2013 negative
RALP 2/19/2014
Pathology T3B NX, MX
Bilateral cancer found involving 6% of prostate
03/07/2013 PSA .6
Posted 5/21/2014 11:53 AM (GMT -5)
North foot.... Man oh man... Post everything positive you can!
I search daily for glimmers of hope.
Keep posting!
All the best
Posted 5/21/2014 1:22 PM (GMT -5)
Good news and always post the positive!!!! I am a G8 and may need radiation one day and the more data posted, the more it helps me and others in making the right decisions.
Posted 5/21/2014 2:35 PM (GMT -5)
I fully concur that good news helps those of us about to embark on the next phase of treatment after BCR post RP. The possibility of cure or long term remission after going through RP, ADT and SRT helps us make the decision to keep fighting!
Bob gl9 pt3b
Posted 5/21/2014 5:58 PM (GMT -5)
Thank you all for your responses. That must mean that drinks are on me.
Posted 5/21/2014 6:23 PM (GMT -5)
I'll have Tito vodka gimlet rocks thanks !
Bob
Posted 5/22/2014 1:14 AM (GMT -5)
Lecture time: Never feel guilty about doing well.

It gives the rest of us hope to know that one our brothers is beating this thing and doing well.

Hope gives the will to keep on doing.

Go live life and be the hope we need.
Peace,
Andrew
I now return you to the regular forum.
Posted 5/22/2014 5:54 AM (GMT -5)
north...have to echo what david said.....dont feel guilty....but know that positive posts give others hope. This place can be too gloom and doom as it is and one of the reasons Im not here as much....just rather keep my mind off of cancer. Keep posting the positive results.....its good for the new guys.
Posted 5/23/2014 12:10 AM (GMT -5)
Northfoot,
I continue to be amazed at the manner in which each member supports the other; that's the primary reason that I'm here--fellowship! Join in and don't feel bad by helping those less fortunate than you. You will feel better and your assistance will be appreciated. If you have psa anxiety it helps to read posts from other members and our "experts" and realize that there are solutions if it goes up.
Keep the faith sir, and congrats on your progress.
Bill idea
Posted 5/23/2014 2:05 PM (GMT -5)
Hi Northfoot. Two things I noticed about this community that made me decide to come out of several months of lurking was 1) its active and 2) its honest. The guys who've already responded have already covered everything I would want to say. Sending you my encouragement and hopes of continued low numbers. I hear you about a heart attack from waiting. When I don't have facts or reign myself in, I can be the queen of what ifs. Take care.
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